How Influential Are You?

My husband told me about this really cool experiment that FAST COMPANY is taking on. Setting out to find the most inluential person on-line. WOW, that's quite the task!

There are millions and millions of people on-line and probably hundreds of thousands who feel they impact lives. So what exactly are they looking for?

The most popular? Or truly the most influential? There is a huge difference between the two.

What if we got thousands to click this link....Making someone who has Neurofibromatosis, the most influential person on-line? What kind of recognition could we bring to the awareness of NF?

This could be HUGE! This could bring attention to NF, that we have been looking for! At least it's worth a shot right?

So heck click on the link, and let's get NF out there! http://fcinf.com/v/cfcm While I do NOT claim to be the most influential person on-line, I feel that people in general living with NF are influential! Let's make an IMPACT!

Positively Negative!

"How can you possibly be positive when you are living with such a horrible condition? I couldn't possibly live with all THOSE bumps!"

I was told this not too long ago, by one of my "friends". "I just don't understand you, and your attitude towards NF." My response was simply this, "When I choose to feel good....I do good, I speak good, and THAT makes me feel even better. I CHOOSE to be okay with Neurofibromatosis, even when it really sucks."

This person will probably never grasp the idea of positive thinking, and while I am sad about that, I cannot focus on how horrible this person's outlook on life is. All I can do, is try to present how it is possible to be wonderfully okay with life.

I grew up around negative people. My mother being the worst of all. Even to this day, all I hear when I speak to her is how bad life is, and how it's everyone Else's fault for her being so miserable.

My mother also lives with Neurofibromatosis. I am sure she hates it, just as much as I do. But I watch in awe how vastly different our lives are. It's almost as if I feel a sudden shift of gravity, every time I am close to her. The weight of her anger and sadness resonates to me, and I begin to act like her. It's scary to me when this happens and pulling away from this is very hard.

This got me thinking recently about who I am hanging around....who are the people in my life that cause this to happen? Why do I continue to be drawn to these people? The answer is simply that I relate with how these people feel. I understand the loneliness, the anger, the frustration in regards to NF.

But here's the big difference, while it's okay to feel these feelings (and I feel them every single day) It's not okay, when those become the only feelings you feel. One must make a very conscience effort to shift those feelings into something productive.

It's not an easy task...I fail all the time. But I never give up. I am not sucked in by Neurofibromatosis. I don't focus my energy on this disorder, instead I find ways to live past it. I try to surround myself with people who will acknowledge me for more than "The woman with the tumors on her face."

It's amazing how I feel when I am around these people. It's almost as if, I don't have NF at all. I feel empowered!

I know that living with Neurofibromatosis scares a lot of people. I deal with that same fear. I can't control NF, but I can control the way I feel about it. Your attitude is in your control.

I choose to live. I choose to THRIVE.

Never Never Never Give Up

I was 7 years old the first time I heard this quote from Winston Churchill. There was a poster in my 2nd grade classroom, that I would stare at and I often got lost in thought about how even though my world around me was giving up....I would never do that....I would always stand up for what I believed in.

At 7 yrs old, I could not possibly understand all that I would be faced with as far as living with Neurofibromatosis. As far as I knew, I didn't have it...It was something my brother was dealing with. I promised that I would never give up on my brother...that I would always be there for him.

Twenty-five years later, I was faced with the reality of being diagnosed with Neurofibromatosis. It took my a long time to accept this reality...and I wasn't always positive about it. Having NF was a hard pill to swallow for me. It was almost as if, I just wasn't ready for all that this reality brought with it. I was scared, and realized, I had been living in deep denial for a long long time.

After three of my children were diagnosed and receiving treatments for NF, this reality became something that I needed to more than just "deal with". I needed to become an example of strength, to help guide my children in a positive direction.

"THRIVING", has become a way of life for me and my family. We "NEVER NEVER NEVER Give up" on things that are placed before us. The road is not always easy, in fact it's rarely easy, but the alternative is not an option.

Who's Right?

What do you do, when doctors don't give you the news you want to hear? "The tests are negative....." "The test came back positive.........." "No surgery is needed.........." "This is urgent......." I have dealt with all of those statements from my own doctors and now I am dealing with them for my kids.

I even found myself a bit disappointed, when my MRI results came back "normal". There were no answers for my symptoms and I became frustrated. I didn't necessarily want there to be something wrong, but I was hoping for some kind of solutions for my pain.

Now with dealing Bailey and her current issues, I am running circles around these doctors who are giving me conflicting information. One says "The sooner the better." In regards to her surgery....another says "we should wait and watch."

While I don't want to put Bailey through any unnecessary surgery, I am finding myself confused at what we push for. What one dr. concidered urgent, another feels the need to put this off.

When people go for a 2nd opinion....who's opinion do they take?

Can't Wash Away the Cafe Au Lait

The other night during bathtime, Rachel looks down at her belly and asked me, "Why do I got these brown marks all over me?" I smiled and added shampoo to her hair.

"Those are called cafe au lait marks, honey, it's part of Neurofibromatosis." I lifted my shirt and showed her mine. She just laughed and responded, "We're the same, that's cool!"

Rachel knows she is different, but she doesn't look at this as a bad thing. She lives each day to its very fullest and doesn't dwell on the hard times she has lived through, or the ones that she may face.

From the moment she was born, from the moment I knew she had NF, I knew it was MY responsibilty to help her realize that she was special. To not let NF define her or stop her.

Our conversation continued as Rachel got squeeky clean. I wrapped a towel around her and kissed her neck. She tells me that her birth marks make her cool and looked down to make sure they didn't get washed off.

"Will I have these forever Mama?" I hugged her tight and told her yes. She just looked at me, smiled said "Good, then I can grow up to be just like you!"

I just love moments like this.